Sandra, UK, anlotinib

[xsandrax00]

Hello, I’ve been absent for some time, but I’m back now with some update.
I’ve started Anlotinib trial as planned without bigger side effects, with the time I’m experiencing sore mouth and throat, rare stomach problems and diarrhoea, however I’m still positive and still think that’s better than side effects after chemo etc.
I had my scans on 9th May and seems like no new mets + biggest ones got smaller about 3mm. Don’t wanna get too positive too soon, but I won’t lie, it made my days recently and I hope for more!
Also wanted to ask if anyone on treatment - Anlotinib or similar- have u experienced hormonal problems? I’ve recently see some changes which I’m somehow connecting to the treatment and I’m wondering if anyone has the same? For example period changes etc? I’m a little worried about this, and waiting for next appointment to discussion it with doctors. If anyone had similar and would like to share I would be really grateful.
Hope u all are well! :)

[D.ap]

Hi Sandra,

I’d sure mention the irregular periods ..
Stress can be a cause but it warrants looking into.
Are you getting pelvic scans ? MRIs ?

Good to hear from you .😊

[xsandrax00]

yeah i had pelvic and abdomen CT scan on the beggining of my journey and one now on 9th May - came out clear.
last time i had way longer period, this month i don't have it at all - i'm just worried to not dissapear totally. Also see lots of skin problems like acneas etc which looks typical hormonal, cause i hadn't got any problems with my skin before. And now i started to have some problem with my feet - they are so sore and painful like they would be full of blisters. I will discuss it on Monday with my doctor, but if anyone have any recommendations for feet problems i could use some :D

[Olga]

Might be Anlotinib side effect, unfortunately.
Most clinical trials show the following side effects:
hand and foot skin reactions, hypertension, fatigue, and lipase elevation, also brothers syndrome, bleeding, proteinuria, hoarse voice, rash, fatigue, liver damage, diarrhea, and mucosal ulcer as rare side effects.

Please review the table with the side effects Figure 2 from the article https://www.spandidos-publications.com/ ... 2020.11685
as I can see hypothyroidism is a frequent side effect, and apparently
"Hypothyroidism Can Make Periods Heavy, Absent, or Irregular
“This can be monthly in some women and far apart in others.” Changes in prolactin levels can lead to thinning of the uterine lining and changes in how the pituitary gland controls the ovaries; both can result in periods stopping completely"

both, thyroids and prolactin levels can be measured to clarify

[xsandrax00]

Hi everyone,
hadn't been here for a while but I'm coming with some update.
So my last scans shows growth of lung mets. That's the exact report which I got yesterday:
'Numerous lung metastases have marginally enlarged, for example left lower lobe measuring 1.1cm previously 0.8cm in June, and right lower lobe measuring 1.3cm, previously 0.9cm and 0.6cm in June and March respectively. No adenopathy in the chest. '

Besides that it didn't spread nowhere else, I even had brain MRI just in case but it came out clear. My doctors don't really say much about any other treatment options or anything really. I'm really worried that it grows and don't really know what to think. Currently I'm staying on 10mg Anlotinib daily dose. My question is should I get back on higher dose(12mg) again? Shall I find out about possible resection of my lung mets (I don't think in my case it make sense since is numerous nodules, but don't know really cause nobody ever mentioned that to me) or maybe it's still too early to think of this ? Or are they any other options to try?
I really have no idea and reading all medical informations here is so overwhelming for me that I have no idea what to think.
If anybody has some advices please help xx

[D.ap]

Hello Sandra,
Are you still on a trial ?

[xsandrax00]

Yes, I’m still on trial and seems like my doctors don’t plan to change anything for now. I’m planning on talking with them about any other options, but for now I’m just trying to do my research as well.

[D.ap]

Hi Sandra
How are you doing? Did you change back to the 12mg, Anlotinib?
When’s your next scan ?
Thinking of you today.☺️

Love,